DOVER — Receiving an organ transplant and getting a second chance at life call for celebration. That’s why the Transplant Games of America brings together thousands of transplant recipients every other year to participate in sports they wouldn’t be able play without receiving a transplant.
Last month, Lloyd Saba of Dover competed in his fifth Games in Salt Lake City, Utah alongside 13 other Delawareans.
A long road
The road to becoming a transplant recipient can be a long one and Mr. Saba’s lasted 27 years.
In 1975, Mr. Saba discovered he had non-A and non-B hepatitis, a viral infection which attacks the liver. It was conclusively identified as hepatitis C in 2000 after further blood tests.
For the first several years of his illness, Mr. Saba was able to maintain his current lifestyle but his symptoms got worse over the years.
“After my diagnosis, it was initially a ‘wait and see,’” Mr. Saba said. “I was still well enough to move to Delaware from Philadelphia in 1999 and keep working in Philly. But by 2002, I had become too sick to make the drive every day.”
His illness began taking over his life, constantly having him back and forth from doctor’s appointments for blood work, ultrasounds, CT scans and draining sessions where at times, up to four liters of fluid were drained from Mr. Saba’s body.
He signed up for a new anti-viral drug test to suppress his symptoms but didn’t qualify on the initial try and tried a different treatment before going off of it six months later without seeing any results.
His hepatitis went to cirrhosis — a permanent scarring caused by years of inflammation and he ultimately developed two cancerous tumors. At this point, transplantation was his only option and he sat on the active waiting list.
“By November of 2007, I was ready to say ‘enough is enough,’” he said. “We had done research and knew it was very difficult to get a transplant and in my case, it seemed especially unlikely.
According to Columbia University’s Department of Surgery, approximately 17,000 Americans are on the wait list for a liver transplant at any given time.
“I was ready to give up and my doctor told me I would only have another six months after stopping all treatment.”
Getting the call
Mr. Saba was disheartened by the prognosis, especially considering he had a grandchild on the way, so he waited on the list until he got a call in January 2008.
“I can tell you exactly what was happening when I received that first call,” Mr. Saba said. “The phone rang at 10 (minutes) until 2 in the morning so it startled both of us but I was told that there was a liver available but it wasn’t in great condition,” he said.
“Over the phone we were told taking the liver would be a gamble and we needed to decide right away. We thought about it and decided to roll the dice and turn down the offer.”
The Sabas later found out that they made the right choice because the available liver turned out to be unusable.
The wait continued, but not for much longer. It was Feb. 16, 2008 when Mr. Saba, then 54, received another call.
“I remember it clear as day. It was 6:18 p.m. when my phone rang and it came up with a restricted number. I was driving past the exit to the Philadelphia airport,” he said. “I normally don’t answer the phone when I’m driving but my best friend’s number comes up as restricted so I decided to answer in case it was him.”
The same representative from other the University of Pennsylvania Hospital in Philadelphia was on the line who had spoken to Mr. Saba in the middle of the night one month earlier.
“He said there’s a liver available and this time it’s a good one,” Mr. Saba said. “I was happy, scared, lonely, because my wife was away and I was worried about what to do with the dog because I had to drive straight to the hospital and since I was already in Philadelphia, there was no time to go home.”
As soon as Mr. Saba agreed to the transplant over the phone, he called his wife, Nancy, who was two hours away at their daughter’s baby shower to give her the news.
“It was such an emotional moment. I had to be driven to the hospital and it was stressful because we didn’t have GPS and we ended up getting very lost but I was on the phone with Lloyd almost the entire drive,” Mrs. Saba said.
“It was just so stressful because I wanted to get there before he got taken into surgery because I was thinking while I was on the phone that this might be the last time I hear from him, ever.”
Ms. Saba ended up getting to the hospital in plenty of time because the two were kept on the edge of their seats for almost 12 hours before the doctors told them it was finally “go time.”
“It was around 5 a.m. when they told me I was definitely getting the liver. They had looked at the computer’s recommendations and had run a few tests that showed I was the best match for the transplant,” Mr. Saba said.
He was going into a world of unknown. Normally surgical patients learn about their procedure before it happens and what to expect, not suddenly rushed back to an operating room.
“I was so nervous. At first I thought I was shaking because I was cold so the anesthesiologist gave me a blanket but I was still shaking so I figured it must have been from nerves. I just kissed my wife goodbye not knowing if I’d ever see her again,” he said. “Next thing I knew I opened my eyes while I was being wheeled into the ICU and saw her giving me the thumbs up.”
Although the surgery happened in what felt like the blink of an eye for Mr. Saba, the six-hour surgery was extremely difficult for his wife who sat in the waiting room with other family members waiting for some kind of news.
“We were just waiting there and a few times I had to walk around and find a little place to hide out, just to be alone,” Ms. Saba said.
Mr. Saba remained in the hospital for a few days on anti-rejection drugs, which lowered his immune system and called for many special precautions, especially during cold and flu season, like wearing a surgical mask, taking high doses of anti-rejection drugs and frequent visits to the doctor — all in Philadelphia.
“I had created a three-ring binder with all the information from his appointments,” Mrs. Saba said. “I had every doctor he had seen, every medication he had been prescribed, all the important details.”
She spent hours on the phone dealing with disability checks, scheduling appointments and more, all while working and caring for her husband too.
But as his prescription doses became smaller and smaller and his doctor’s visits less and less frequent, life slowly began to return to normal except for the thoughts of the donor who had saved his life.
The Sabas found out that the donor had been a 19-year-old man from Maryland named Justin with a newborn son of his own.
“I was so angry with God,” Mr. Saba said. “Only a few months earlier, I was ready to die, I had accepted it was going to happen and here you have a mother who’s lost her son and a boy who’s going to grow up having never known his father.”
The Sabas’ first steps in reaching out to the family was writing a letter to the Gift of Life Donor Program, who passed it along to the donor’s family.
“We were encouraged to write to the family and we did. We thanked them so much even though we didn’t know their identities, where they lived, or really anything about them,” Mr. Saba said. “But we wanted to thank them so much because I know his family was making the decision to let me live while they were grieving, during what was probably the most difficult time of their lives.”
After sending several letters in the mail over the course of two years, the Sabas finally received a reply.
“We were so used to getting envelopes in the mail from the Gift of Life that we didn’t even realize what it was at first and weren’t rushing to open it,” Ms. Saba said.
At that point, the Sabas were very involved with the donor program, giving talks in drivers’ ed courses about the importance of being an organ donor and advocating for the program as often as possible.
“I was going through the mail and I opened an envelope and it was full of pictures so I scanned the paper inside and Lloyd asked me what I was looking at and I said, ‘Sit down,’” Ms. Saba said.
It was a two-page letter that took two hours to read because it was very emotional.
“We were excited but it was such an emotional process. In the letter we found out my donor’s name was Justin, the circumstances of his death and all the things he had enjoyed during his life,” Mr. Saba said.
The pair immediately set to work writing a reply to get in the mail right away but they didn’t get a response for years.
Eventually they got a phone number from their family services coordinator saying that Justin’s family wanted to get in touch. In the years they hadn’t heard back, Justin’s mother had passed away and while cleaning out her house, his sisters found all the letters and photos the Sabas had sent that she tucked away for no one else to see.
Justin’s older sister called the Sabas and asked what they were doing for Labor Day weekend.
“I said we weren’t doing anything and she said, ‘Great, we want to come by to meet you,’” Mr. Saba said. “They pulled up to the house and I was so nervous I was just shaking, but I wasn’t scared because I felt like I had already known them from our correspondence. They weren’t strangers.”
The two families caught up and have stayed in touch ever since. The Sabas have been to Justin’s family’s home and met his son who is now 10 years old.
“It’s beyond my wildest dreams that we’ve been able to form a relationship like this with them,” Ms. Saba said.
While waiting for the initial response from Justin’s family, the Sabas had gotten very involved with the Gift of Life and only a couple of months after his transplant learned about the Transplant Games, which happen every two years. The first one after Mr. Saba’s transplant was in Pittsburgh but he was ineligible to participate because all participants must be nine months post-op.
“The Games seemed like an amazing opportunity so I knew that when the next ones came around in 2010 that I definitely wanted to go,” Mr. Saba said.
The Transplant Games begin with an opening ceremony like the Olympics where everyone walks out with their team — all the Delaware participants are on Team Philadelphia, which this year won 150 medals — 69 gold, 43 silver and 38 bronze.
Other local participants included Anastasia Prieto, 11, of Dover. She received a liver transplant in 2013 and won silver in doubles bowling. She also competed in basketball, bowling, darts and track & field.
Many of the participants carry a photo or memento of in honor of their donor during the ceremony and living donors are welcome to come support their recipients.
“I was just crying when I walked out with my team and saw everyone cheering. It’s just such an overwhelming celebration of life,” Mr. Saba said.
During the five Games, Mr. Saba has participated in bowling, golf, darts and Texas Hold ‘Em and has won several medals. At this year’s event, he competed in the 2K, bowling, darts, golf and Texas Hold ’em.
“My goal going in was just to win a medal to give it to Justin’s son,” Mr. Saba said. “I wanted him to know that his dad was a hero and saved my life so everything I’m able to do now is all thanks to him.”
“It is so inspiring to see hundreds of people from our area and thousands from across the country come together to celebrate the success of organ donation and transplantation,” said Howard M. Nathan, president and CEO of Gift of Life Donor Program. “There are so many incredible stories, and every one of those stories started the same way — with someone who selflessly said yes to donation.”
Mr. Saba and his wife plan on participating in the Gift of Life donor program’s efforts in the coming years and participating in as many Games as possible.
The next Transplant Games will be in 2020 in The Meadowlands in New Jersey.
Officials say one organ donor can save the lives of up to eight people, and a tissue donor can enhance the lives of more than 75 others.
For more information or to register for Gift of Life, visit donors1.org.
Ashton Brown is a freelance writer living in Dover.